Newly diagnosed

[Saluki2018]

Hello 👋

Only today iv been told I have fibromyalgia..,

Not what I expected to be fair , looking for support from others that suffer, and how it affects u 😊

[Hidden]

Sorry to hear you have fibro,I had to give up certain things that tiers me out easily,what did your Dr say as in any plans to help you in your future?

[Saluki2018 in reply to Hidden]

I’m not sure yet to be honest , I have an appointment with my doctor on Monday to discuss ..

Thanks for reply ..

How do I feel with it ? , what’s your symptoms like ?

If u don’t mind me asking 😊

[Hidden in reply to Saluki2018]

Thought was just pains and tight muscles but turned out it was muscle spasms,once they realized that they gave robaxin to me which does help but doesn't take away completely, I get confused everyday ,I try to grab a sleep if traveling anywhere cause get mixed up and endup in places I've never been nearly every single time I goto my mothers lol,she's now used to us arriving hours later than planned and even calls me asking if I've went a wee jaunt around Scotland again!,I have someone with me everywhere I go to,I burst into tears all nothing &everything even the news,that's very frustrating, I walk with sticks but have osteoarthritis to, I'm seeing pyhsio from pain clinic who has a lovely lovely way with people like me,I've been doing the thaichai breathing its helping,I'm also seeing a cpn which is good,I've recently referred myself to adult services and she trying to get things in place to help make my life easier and take weight off my two daughters shoulders.I don't mind you asking me anything at all ever.how about yourself? How'd you come to go be checked by doc?

[Hidden in reply to Saluki2018]

Meant how do you feel about the diagnosis? I was accepting but very tearful and felt my body had betrayed me,it was hard to take.

[Hidden]

Oops my bad manners!,welcome to health unlocked,you'll get people that understand your pains frustrations and maybe even have tips for you.😸

[Saluki2018 in reply to Hidden]

Thank u very much , it’s nice to meet u 😊

[honeybug]

Hello Saluk2018 😊🌸🌿🦋

Welcome to the forum.

I’m sooo sorry that you have FM...but you’ve come to the right place to learn about the variations of this condition and the affects on us.

I read the posts for 4-5 months before replying and making some of the dearest friends.

We share and care laugh cry and encourage each other.

When lacking wisdom for direction just words of compassion and loves make all the difference.

You’re being a distric nurse you have a wealth of knowledge that can be used to help so many understand the terminology they are given but not clarified.

I hope you will feel wanted and loved.

I’m here for you. I’m in the USA 🇺🇸 and 6 hours behind in time.

Feel free to join in the conversations.

I started with CFS that morphed into severe FM having been diagnosed in 1992.

I turned 67 in April...still feel like I’m in my 20s mentally but physically with the ravages of so many conditions since birth like I’m 100+.

As long as I can use my mind hands and voice to aid others I’m still useful. This forum has such purpose for me.

As you find your footpath through your new reality with this condition I know you will find your footing using the members here to aid you through your experiences and in return you’ll be a guide to others too.

Have as painless a weekend as possible my new friend and we’ll chat soon.

Take care and best wishes.

😊🌸🌿🦋🙏🤗💗😘

[Saluki2018 in reply to honeybug]

Thank u so much , I have to find my feet I think ..

I’m very pleased to meet u and hope to exchange wisdom , when I gain some that is lol 😂🌺

[honeybug in reply to Saluki2018]

You will dear have faith and don’t be shy. 🌿🌸🌿

Just follow the rules all members are supposed to. If you are hassled or find an aggressive post/reply report it and let the admin team handle it. You’ll do great.

😊🌸🌿🦋🙏🤗💗😘

[Saluki2018 in reply to honeybug]

I hope so 🤨

Iv Googled so many things over the years , strange symptoms don’t make it easy lol 😉

I shall do a lot of digging now to find out as much as I can , but I have noticed it can be very different person to person 😁🌼

[honeybug in reply to Saluki2018]

Yes this is so true. That’s why this forum is so valuable because we can get it straight from the afflicted’s personal account as well as the tests and treatments tried and how they did/didn’t work.

I was diagnosed and then the Celebrex I was using was stopped. I found out it is a drug of last resort and so tightly controlled that it is difficult to get a doctor to write prescriptions for it. It worked wonders for me. I’ve continually gone downhill without it. My complaints fell on deaf ears and I suffer in silence.

Until I joined this forum I had no clue the depth of this condition nor how many were afflicted with it.

Do as much research as you can. It also helps to accept it too. Try to stay positive and learn to pace yourself.

The members here are great at reaching out and sharing.

Take care dear.

😊🌸🌿🦋🙏🤗💗😘

[Saluki2018 in reply to honeybug]

I will do , thank u very much for the insight...

Funny iv alway thought that my body was unhealthy, as the was alway a random pain without provocation!!

But on the flip side I could alway just work through the mental fog or physical pain , but on bad days I was very clumsy 😉🌼

Have a great day 🌺🌺🌺🌺🌺

[honeybug in reply to Saluki2018]

Gee that all sounds very familiar. Amazing how we think alike and push through it and carry on. I know there are countless others that your story is like theirs too.

Have a great day too dear.

🌸🌸🌸🌹🌹🌹🌸🌸🌸

😊🌸🌿🦋🙏🤗💗😘

[Saluki2018 in reply to honeybug]

It sounds great , having someone say that it sounds familiar I mean lol 😊

[honeybug in reply to Saluki2018]

That’s exactly what I said when others replied that way to me too. I’m so grateful for this technology to make chatting possible despite thousands of miles between us.

Take care dear.

😊🌸🌿🦋🙏🤗💗😘

[Saluki2018 in reply to honeybug]

Me too 😁

[honeybug in reply to Saluki2018]

😊xxx

[Quackers2]

Hi Saluki,

I am sorry to hear of your diagnosis today. I've had Fibromyalgia since 2009 as you must have read on my profile. I must admit that I was relieved to put a name to the symptoms I was experiencing. I thought I was going nuts at first because I couldn't add up simple amounts when I needed to bank some cash nor remember things and I was experiencing pain throughout my body. It has taken a long time for me to manage the pain and not overdo it and start a 'flare up'.

What have you been experiencing Saluki? If I can help you with any info or just a chat about our challenging illness I'd love to hear from you. All the best to you anyway.

Be kind to yourself and don't beat yourself up when you can't do what you used to do.

Best Wishes

Sue

[Saluki2018]

My memory is shocking , I don’t know how many times I have to re-read how to spell a simple , I just can’t remember, and I’m so forgetful it’s not funny !

I forget important things like appointments or , replying to post 😱

And I’m so tired all the time , my neck pain has probably been the worst pain over a long period , but I feel like an old woman lol 😆

At times I thought I’m dying of something, strange in places , all feel like they are deep pain if u know what I mean ..,

Holding my hair dryer doing my hair makes the muscles in my arms burn , like a work out ..,

And I get so breathless when I rush about 😢😊

[1499 in reply to Saluki2018]

Welcome! Sorry about your diagnosis but we are all here to help and advise in anyway we can as we fully understand the symptoms you are experiencing, I hope your G.P. and Pain clinic can support you also, and all of us "Fibro Warriors" are here for you. Take Care x

[petmama]

Hi Saluki, at least now you have a diagnosis and now get on with life finding what works for you and what doesn't it all trial and error. I was diagnosed 10 or so years ago eventually. Hope you get all the help and support you need and require, need to talk or vent I am here....

[YASMINTINA FMA UK Volunteer]

Hi I can see you had some lovely replies from members already, great place to come for a chat, share useful tips with each other as well, if you would like to lock your post/posts il post this link to healthunlocked.com/fibromya... normally generates more replies for our members as only our forum can see xx

[Hidden]

Welcome hun.

[Bacaloca]

Hi Saluki2018,

You certainly have found the right place..

I was sent to see a counsellor this week because my GP said my fibro was making me depressed, imagine how pleased I felt when I discovered my counsellors mother has fibro so she understood how I was feeling.

How lucky was that. I think if you have an understanding team that's half the battle won.

[Saluki2018 in reply to Bacaloca]

That was so lucky ...

Funny but sometimes I don’t mention pain in certain areas cause it can be gone as quick as it came 🤨

I’m bi polar so my mental health is always looked at 😆

[rach1402 in reply to Saluki2018]

That's interesting, there is a link between fibromyalgia and ADHD, both of which I have and ADHD can develop into bipolar disorder if it's not treated effectively 🤔

[Saluki2018 in reply to rach1402]

Yes I did read about the link too 🤨

It is challenging, most of my complaints can be put down to my bi-polar , but I know it’s not , iv felt exhausted for months , not like me as iv usually got loads of energy...

But I did read that it can be linked to trauma, iv had a lot of things happen over last 4-5 years so who knows 🤨🌺

[rach1402 in reply to Saluki2018]

Yeah it's such a complicated disorder, a lot of symptoms cross over with other health problems so it's hard to figure out where one illness ends and another begins. Maybe it's more of a spectrum than separate conditions 🤔 whenever I read about what causes the things I've been diagnosed with it always seems to come back to an imbalance of neurotransmitters. I've noticed that my brain fog related to my fibromyalgia improves dramatically when I've taken my ADHD medication, which works by helping neurotransmitters to stick around long enough to pass messages around the brain and to and from the rest of the body. But that doesn't help with the pain unfortunately. Ah well, until they identify the root cause of fibromyalgia I suppose the only thing we can do is try to manage the symptoms by trial and error. I hope you find something that works for you x

[Saluki2018 in reply to rach1402]

As I do for u

Take care of yourself 🌺🌼🌺

[Finmc]

Sorry to hear you've been diagnosed with Fibromyalgia. Could I ask how the decision came about and was it your GP that diagnosed it. The reason I ask is I have spent months under the pain clinic with severe pain. Thank you

[Saluki2018 in reply to Finmc]

Iv been back and fitting doctor over months ...

Had low folic acid , so they put me in pills , told me I’m prediabetic , , then gave me pills for under active thyroid ....,

But I went to hospital out of hours service , with the worst pain in my upper back and no pain killers can touch it .,,

I was reeling loads of symptoms off iv had over the years and she told me She’s sure I have fibromyalgia

She written to my DR and iv an appointment to discuss the way forward.,

What happened your end ?

🌺🌺

[Lizzy-m]

Although I don't post very often it really is a comfort having this site and the lovely people on here to turn to. Just knowing that others are in the same boat is sometimes very reassuring. The knowledge and support from this site is priceless. I find that GPS just don't have the time to explain things properly so this site helps fill in the gaps. Lots of love and be nice to yourself xxxx